1. Factors that Influence
Adherence to Highly Active Antiretroviral
Therapy (HAART)
Author: Michaela Naicker
2nd UNISA Biennial Conference on Social Behavioural
Change towards Sustainable prevention of HIV, STIs
and TB in Africa
22-24 May 2013

2. Rationale for Study
• SA has the largest population of people living with HIV, the
largest number of people on ART and the largest public health
ART programme in the world.
• KZN province, the epicentre of the SA epidemic has the
highest prevalence and incidence rates in the country.
• The majority of HIV infected persons will eventually need ART
and near perfect (>95%) sustained adherence is critical for
optimal health outcomes.
• Sub-optimal adherence has potentially severe health
outcomes which may reduce treatment efficacy, cause drug
resistance [compromising available tx options] and increase
morbidity and mortality [susceptible to opportunistic
infections and cancers]

3. Research Problem and Objectives
The main objective of this study was to explore the factors that
influence adherence to HAART/ART.
The specific objectives were to gather in-depth information
about the following factors that influence HIV medication
adherence:
• Social and Economic Factors
• Health Care Provider and System Related Factors
• Condition or HIV Disease Related Factors
• Therapy Related Factors, and
• Person/Patient Related Factors

4. Key Questions
• What specific influences might social and economic factors
have on adherence to ART?
• What roles do health care providers and the health care
system play in facilitating adherence to ART?
• Does the medical condition of the HIV+ve person influence
ART adherence?
• Are there specific therapy related factors that might influence
adherence?
• What personal factors may influence adherence?

5. Methodology
• This research is a qualitative descriptive study to explore the
factors that influence adherence to HAART among persons
who access treatment in the greater Durban area.
• This qualitative study attempts to better understand
phenomena, the ‘what’, ‘how’ or ‘why’ questions that relate
to factors that influence behaviour to lifesaving medication.

6. Sampling Technique, Sample Size and Sampling Criteria
• Recruiting a sample willing and eager to share their
experiences of adherence posed a real challenge.
• An approach that demonstrated patience and perseverance as
well as an understanding of confidentiality and trust issues
enabled a small sample of 13 persons for this study.[HIV
infection is still highly stigmatised]
• The non-probability theoretical sampling technique was the
method of choice as this afforded the emergence of a rich
dense account of the factors that influence adherence. It is a
kind of purposive sampling.

7. Sampling, Sample Size and Sampling Criteria continued
• Eligible participants were over 21, were on treatment for at
least 2 years and appeared to be adhering optimally to their
medication.
• The 5 male participants accessed ART from their workplace
wellness programme and the 8 female participants accessed
treatment either using private, semi-private or public health
care in the greater Durban metropolis.

8. Data Collection and Data Analysis
• The In-depth Interview was the data collection method of
choice because they combine structure with flexibility, is
interactive and allows the use of questions to further explore
or clarify responses.
• In-depth interviews of one to one and a half hours were
conducted and the data was collected using a combination of
tape recording and detailed note taking.
• Data was analysed using thematic content analysis – this
involves identifying recurrent or common themes and
categorizing information under themes that emerged from
the data.

9. Ethical Considerations
• The research posed no harm to the participants and plans for
further counselling was available should the need arise.
• Informed consent ensured that the purpose, potential benefits and
risks and the reasons for inclusion were explained to enable
informed decision making. Participants were assured that they
could withdraw at any stage of the process.
• Participants names were changed to protect their identities and to
ensure confidentiality.
Limitations of this Study
• The intention of this study was to listen to the individual
experiences of persons on treatment and to gather rich
information about their experiences of adherence.
• The sampling method and small sample size means that the results
may not be generalised to the larger ART population.

10. Results
Social Support
• Social support emerged as a great motivator of adherence
behaviour. The social and emotional support received
from close family, friends, and colleagues positively
influenced adherence behaviour. “You need a support system
… you can’t be on your own …you need people’; ‘My family, my
kids make me take my meds, they help me’. Literature supports
this finding.
• Persons who accessed workplace, private and semi-
private health care were particularly expressive about the
supportive relationship they shared with their health care
providers. ‘I can open up to him [doctor] …talk man to man
… if he is not there I can go talk to her [occupational health
nurse]

11. Socio-Economic Factors
• Poverty, transport Cost (to and from clinics) and long travel
distances emerged as stumbling blocks to adherence
behaviour.
• Participants also shared that unemployment may lead to
depression and this causes persons to miss doses.
• Dependence on the social grant cause persons to default to
keep their CD4 <200 (to qualify for the grant).
• Needing someone to take care of children negatively
impacted on adherence.
• One participant was aware of people selling stocrin because
they needed money for their families.
• These findings are consistent with the literature.

12. Health Care Provider Factors
• Most participants shared positive experiences with their
Service Providers – receiving social, emotional and treatment
support for Adherence.
• The public sector attendees were generally satisfied but less
expressive about their relationship with their Service Provider.
• The Wellness clinic attendees and those who accessed Private
and Semi-Private Health Care were full of praise for the
quality of service experienced –spoke highly of the
encouragement and support received, and the open and
trusting relationship they shared with their service provider’s.
These health care providers were described as good listeners
who involved the persons in treatment decision making.
“passionate doctor takes longer and shows he is concerned”
“ doctor talks to me, he explains things to me , he has an open door policy”

13. • An area of grave concern mentioned by participants accessing
care at Public Clinics and Hospitals was the lack of
confidentiality and privacy regarding their HIV treatment
[which violates their right to confidentiality and privacy –
Patients’ Rights Charter].
“if you are waiting in that queue then you are waiting for ART”
• Persons in need of treatment were therefore reluctant to
access treatment at their local clinic or hospital because the
community would get to know their HIV positive status.
• Persons would therefore access treatment in another town or
clinic far from their home to ensure that no one recognises
them. Eg. Person lives in Tongaat but accesses ART miles away
in Greytown or Pietermaritzburg.
• Issues about compromising confidentiality were not abundant
in the literature.

14. HIV Disease Related Factors
• These factors refer to the symptoms or infections that an individual
may acquire or experience because of a weakening immune system
response caused by HIV on the body’s defence cells.
• Most of the participants felt sick, weak, tired and feverish more
often than not or they experienced weight loss or had rash which
could not be explained.
• Seven participants were diagnosed with opportunistic infections.
• The symptoms and opportunistic infections are all indicative of a
weak immune system response.
• The above is in accordance with the literature which states that HIV
infection in SA is often diagnosed late, when the CD4 count is well
below 200.
• Health outcomes are therefore poorer because Tx starts when the
immune system is quite compromised.

15. Treatment Factors
• All participants experienced side effects to some extent when
treatment was initiated.
• Responses to S/E were varied- from experiencing very little
S/E for a few days to really struggling with adverse S/E for
weeks/months.
• This demonstrates that people react very differently to similar
prescribed medication – indicating the importance of
individual monitoring, information and education for persons
on treatment.
• The benefits of ART far outweigh the risks; ART is well
tolerated by the majority of persons on treatment and most
side effects are manageable.

16. ‘Patient’/Person Factors than Influence Adherence
Positive Attitude and Strong Beliefs about the value of ART
• All participants were determined to adhere optimally because they
believed in their tx and wanted to live healthy lives.
Stigma, Secrecy, Discrimination, Disclosure and Denial
• Only one participant was completely open about her status.
• All others disclosed to at least someone whom they could trust –
close family, friends. Disclosure increases adherence behaviour.
• Most shared that hiding to take medication negatively influences
adherence.
• Stigma is of the utmost concern because it is both cause and effect
of secrecy and denial – persons claim that they have less
stigmatised diseases such as cancer, thus preventing them from
accessing life-saving ART.
• Two participants shared that stigma associated with HIV is not as
bad as before.

17. Education and Knowledge about HIV/AIDS
• Participants shared that knowledge and understanding about
the importance of taking ART as prescribed enhances
adherence behaviour.
Traditional Medicine
• All Participants were careful about not using traditional
medicine with ART because of the information and knowledge
they received about ART.
• One Participant accessed ART as a last resort because
traditional medicine was not helping his illness.
• Participant’s reported that they were aware of people in need
of ART who opt for traditional medicine only.

18. Normalisation of HIV/AIDS
• Most of the Participants accepted HIV infection just like any
other illness or disease.
• They have an illness, just like any other chronic illness eg.
[diabetes, hypertension].
• Participants felt that they can live a normal life if they take
their medication as prescribed.
• Normalising HIV/AIDS may be the key to ending stigma, denial
and the shame associated with HIV/AIDS.
Motivating Factors –Parenthood and Responsibility
• Participants with young families shared that their motivation
for adhering and staying healthy was because of their
responsibility as a parent, a provider and a spouse.
• The spoke passionately about their responsibilities and were
determined to stay healthy.

19. Lifestyle Factors
• Most Participants led a quiet life with their families and one
participant stated that staying in one place makes taking
medication much easier as compared to moving around a lot.
• Most of the Participants lived a healthy lifestyle - eating
healthily, exercising.
• Participants also shared that being organised and responsible
helped adherence.
Religion and Spirituality
• For 3 participants God and their strong religious beliefs
helped them cope with living with HIV and with medication
adherence.

20. Forgetfulness
• All Participants shared that at some point in their lives they
may have forgotten to take their medication.
• All shared that they knew exactly what to do if they forgot to
take their ART because they understood the consequences of
forgetting.
• Some used reminders eg. pocket alarm,TV programme, cell
phone.
Self-Efficacy
• Self –Efficacy can be described as a person’s belief in his/her
ability to take their medication as prescribed and this
positively influences adherence behaviour.
• Most participants alluded to self-efficacy - Bob’s ‘self belief’,
Mel’s ‘intrinsic belief’, which is supported by literature.

21. Health Improvement – Ambiquous
• One person shared that some people on ART take their
treatment only when they are ill and then stop taking
treatment when they feel well.
• Therefore adherence counselling at this stage of tx is critical if
optimal adherence is to be maintained.
• This reiterates the need for ongoing counselling and
education throughout the different periods to better
understand the challenges that come with lifelong treatment.

22. Interesting Observations from this study
• Despite the HIV/AIDS Awareness /Know your status
campaigns, all the participants accessed ART only when they
presented with an opportunistic infections [TB,PCP] or when
the disease impacted severely on daily functioning.
• The Workplace attendees alluded to exceptional care at their
Wellness clinic – no HIV queue, privacy and confidentiality
and supportive caring staff – yet those participants still only
accessed Tx when their HIV disease was impacting negatively
on their ability to perform their work related tasks or when
they presented with an opportunistic infection.

23. • All participants accessed ART when their CD4 counts were
below 100 (which shows that we are still battling to get
people to test early and to access treatment early – before
immune system compromise).
• Most people are not aware of their Health Care Rights as
outlined in the Patients’ Rights Charter.

24. Conclusion
• Life long sustained perfect[>95%]adherence rates poses a real
challenge to persons on ART. Typical adherence rates over
prolonged periods of time are in the range 50 -75%.
• The benefits of sustained near perfect adherence are
enormous:
- Persons on treatment can live relatively normal long healthy
lives.
- Negligible viral load positively contributes to prevention.
- Public ART roll-out is not compromised because of decreased
resistance with increase in adherence.
- Persons becomes less susceptible to opportunistic infections
and cancers.

25. • This study recognises the value of the subjective experiences
of persons on treatment with regard to their ability to take
their medication as prescribed.
• Information gleaned enables a broader and more in-depth
understanding of the factors that may influence adherence
behaviour.
• Emphasis on the unique subjective experiences may enable
greater insight into strategies that enhance adherence
behaviour.

26. .
Accessing treatment early – before the immune system is
compromised still poses a challenge that needs to be
addressed.
As persons live longer because of ART, ongoing research will
need to explore the effects of treatment over time, the effects
of treatment at different life stages as well as the ability to
sustain high levels of adherence over a lifetime.
Thank you